The Impact of Genetics on the United States Health Care System

Lecture by C. EVERETT KOOP, M.D., Sc.D.

February 13, 1997

notes by Meghan Drueding

Dr. Koop is well qualified to speak about genetics and health care in the U.S.; he served as head of Children's Hospital in Philadelphia and spent time working on President Clinton's ill-fated health care reform bill. He worked closely with three presidents as well as Hillary Rodham Clinton.

Friends of Koop's with disabilities:

· Rob Horne, who has Lou Gehrig's disease. Entire body is paralyzed except for left eyebrow and right big toe. Horne has a system rigged up to turn on lights, etc. from his bed and to spell words with his big toe. Using this method, he wrote a book entitled, How Will They Know When I'm Dead? This is an example of a congenital problem that did not show up until the age of 42. Also an example of an indomitable spirit who did not let his disability stand in his way.

· Child with Freedrake's ataxia, a congenital disease in which one loses the ability to walk properly and control over bodily functions, has muscular deterioration and mental retardation. Example of how hard it can be to live with people with disabilities -- how expensive and all consuming.

Prenatal Genetic Testing

· Genetic testing to see if babies are prone to congential defects might be helpful to the parents of the child. But, it might also make it easy to declare those babies with problems unmarriagable, unemployable, or uninsurable. The health care system in the U.S. is prejudiced against people with disabilities because neither taxpayers nor lawmakers want to spend the money necessary to take care of them properly.

· Trauma produces more disabilities in the United States than does genetics. The biggest killer of children under the age of 14 in the U.S. is unintentional injury. 8,000 kids die per year as a result of an accident, and 50,000 are permanently disabled. Of those, some are severely handicapped, others are more mildly affected. Others have invisible defects, such as dyslexia.

· Dr. Koop uses himself as an example of one who has many disabilities and can still lead an active life. He has numerical dyslexia; received a cerebral hemorrage from playing football at Dartmouth; broke his neck ski jumping while at Dartmouth which resulted in his being briefly quadriplegic in 1986 because of poor blood circulation; and has a titanium and Teflon knee. Yet he is in his eighties and is still working and in generally good health.

How the disabled are affected by health care in the U.S.

· Disabilities disrupt the life not only of the person who has it, but also of the person's family -- puts tremendous strain on marriages, sibling relationships, family finances.

· When a person turns 18, under insurance he or she is no longer a child. Can be blackballed if disabled because the insurance company is too expensive. The disabled person is who insurance was invented for.

President Clinton wanted health care with:

Universality -- everybody in U.S. should be covered with some kind of insurance.
Portability -- As it is, someone who works for a company has to stay in that job in order to receive the insurance benefits. So a parent who has a child with a congenital defect has to stay in his or her job even if he or she hates it, and also runs the risk of possibly being less likely to be hired. "Portability" means that insurance policies should be made portable so that if you switch jobs your insurance comes with you.
Preexisting condition exclusion -- The Kassebaum-Kennedy bill provides for the relief of a person with no health care, by saying that everyone gets health care insurance, even if they have a pre-existing condition. But the K.K. bill does not place a limit on the insurance premium. There is no cap at all, so the bill is not effective.

Who gets health care in the U.S.?:

Out of people over 65, a small percentage do not get any kind of health care. A large amount of senior citizens are covered by either Medicare or Medicaid, both of which are good solid systems. Medicaid is for those who have less money. The rest of Americans of all ages are either insured by their employer, called indemnity insurance, or else are uninsured. This last group includes 43 million people.

Patients without insurance are 1.2 to 3 times as likely to die as are people with insurance. This is because those without insurance often are not in as good health to begin with since they have not been getting proper care, and when they do get care it is often too late or of poor quality.

The "conspiracy" of the American health care system: costs are shifted to the indemnity insured from the uninsured.

How parents cope with a disabled child

The parents of disabled children love their child even more than the parents of normal children, for various reasons: guilt, sorrow, responsibility, pride of accomplishment

Examples: excerpts from parents of disabled kids newsletter: boy with cerebral palsy who wants to experience sex, couple who wanted a baby so badly they did not care if he or she had a defect.

How do the disabled feel about assisted suicide?

Experiment in Keene, N.H.-- government gave money to the disabled and let them decide what to do with their lives - where to live, how to best treat their disabilities. Results: cheaper than providing care for them, and the patients are happier with their lives. Koop asked if they could do pilot runs of this project in 10-15 other communities and is now chair of a committee that is doing this.

The disabled feel that they are the next target group. The first are the terminally ill. Euthanasia (assisted suicide) hinges on the issue of intent.

Dr. Koop feels --

the physician's right to assist with suicide is not in the Constitution.
he compares slavery and considering children as chattel to euthanasia; both are actions which were once legal but considered immoral by many.
suicide is the easy way out; like not eating Thanksgiving dinner because there are starving people in Africa.
assisting suicide is not really compassionate because if a doctor were truly compassionate he or she would try to understand and help the patient cope.
Suicide is not death with diginity.
Rob Horne was anxious to live because he had no impression that his life was not worth living. Allowing assisted suicide does give that impression.

Questions to Think About

How should we think? Should we try to prevent lives that may interfere with the quality of our own? Should we focus on the living rather than the unborn?

Our children could engineer a "perfect" race. What are the implications of this?

Should abortion be the means of a better/healthier society? Should we get rid of people with the gene for addiction? or the gene for Alzheimer's?